Help understanding symptoms and blood results.

[KDen72]

Hi, I m a 44 year old female that has been suffering with lupus 'type' symptoms including a facial rash that flares as symptoms flare, for a number of years now. Leading to ?cfs diagnosis, ?Fibromyalgia diagnosis but nothing being done.

Dec 2015 I had a severe tonsillitis and shortly after developed Horners Syndrome of the left eye and altered taste of sweet items. I was referred to neurology who performed a catalogue of scans and investigations to rule out many conditions all of which came back normal, thank goodness.

Since then I ve been going downhill health wise, extreme fatigue, muscle fasiculations, severe muscle and joint pain, burning and tingling sensations and intermittent severe vertigo.

I have recently had bloods done which revealed a very low vitamin d and I know that this alone can produce a lot of the above symptoms I ve mentioned. My ESR was also raised, my neutrophil count was low and PTH was slightly elevated. Twice now I ve had a positive on the Lupus anticoagulant (I haven't had any coagulation events at all) and then it says 'nuclear antibodies negative'. So I m just asking, considering my symptoms and blood results, is it possible to have lupus with negative nuclear antibodies or is there a more specific test I should ask for?

Thank you

K

[Hidden]

Our doctors don't use blood tests alone to diagnose lupus and also take a medical history. Sometimes it's possible for blood tests to come back false negative and there's no one definitive test for lupus.

There's a criteria for lupus that's also very useful in making a diagnosis, 4 or more of these symptoms should be present: lupusresearchinstitute.org/... From what you say it looks like you fit the criteria. Also low vitamin D levels is common with lupus patients.

I don't know if you've actually been seen by a lupus specialist but it would be worth asking your GP to refer you to one if you haven't. They're usually a rheumatologist with an interest/specialisation in lupus. Dependent upon whether you want to travel to London (if you're a long distance away) you can be referred to the Louise Coote Lupus Unit at Guys Hospital, they will see patients from all over the UK.

If I was you I'd be persistent and ask to see a lupus specialist, if nothing else to rule lupus out.

Good luck.

[KDen72 in reply to Hidden]

Thank you for your reply. No I haven't seen a Rheumatologist, I have seen a neurologist and due to the abnormal bloods and normal neurological tests she is referring me to an Endocrinologist (probably due to the PTH level). This is my point I keep getting referred to people but not the right people ;). I will speak to my GP about referring me to the Louise Coote Lupus centre, I don't mind the travel at all if I can get answers either way as I feel I m just in a slow decline, have woke up today and all my joints, even my finger and toe joints, feel very stiff and severely painful

[Hidden in reply to KDen72]

Ah ok, then that's definitely the solution - you need to see a rheumatologist and ideally one that's a lupus specialist as their level of knowledge on lupus is variable. It does sound possible that you have lupus and they'd be able to tell you.

[KDen72]

Very frustrated 😡 GP says as it was consultant that did the blood tests, she needs to be the one to refer me 'I don't want to tread on her toes'!!!!! In the meantime I m left to try and battle on and pushing the medical profession is the last thing you feel like doing when you feel so ill 😪

[Hidden]

As someone that was misdiagnosed with lupus for 4 years I just plough on now and don't worry about who's toes I step on. You need to be seen by the right person to eliminate or confirm lupus. I'd be persistant, it's worth it for peace of mind and also of course, when you find out what is actually wrong you can begin treatment. Good luck

[Marta76 in reply to Hidden]

Since you were misdiagnosed have you found out what you do have?

[KDen72]

Exactly, it was the GP who said he doesn't want to step on the consultants toes, I think it sounds like a cop out! I ve got two options now, contact the consultants secretary and try and get her to refer me or see another dr at the practice for a second opinion.